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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Finding The Right Combination Of Learning Sources
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17 posts in this topic

When attempting to learn about something in depth, the key often is to find the right combination of resources. It's almost impossible to find a one-stop shop that meets all needs when it comes to something as complicated as medicine and celiac disease. I would like to share with this group of people the combination of sources I have found that has helped me unlock many of the mysteries and impediments to my own understanding of celiac disease.

First off, the two books I bought after diagnosis last year were The Hidden Epidemic and Gluten Free for Dummies. Both are your pretty standard purchases and both launched me on my very imperfect often highly frustrating understanding of celiac disease.

The most annoying of my learning blocks was the concept of nutrient absorption. From the Green book (Hidden Epidemic: Celiac Disease) I walked away with - celiac disease prevents the proper absorption of nutrients from food. And that was pretty much it.

My screaming question was: ABSORPTION...WHERE????? Do I want food to pass into the blood stream? Does it go there directly? If we don't have villi then isn't the resulting Katie-bar-the-door free for all state of the small intestines in reality a good thing since then food is more easily and quickly taken into the blood stream?

This was my fundamental question/level of ignorance.

It was not until I happened upon The Key that I got it.

The Key is a wonderful book called Know Your Body: The Atlas of Anatomy, introduced by Trevor Weston MD. (It's also been introduced by others, I learned yesterday.) I l-o-v-e this handy dandy book and cannot recommend it highly enough. I am not particularly scientific-minded but I am curious and I loathe mysteries. This book was just what the doctor ordered.

The villi contain the blood vessels and lacteals that transport the nutrients either to the blood stream or to the liver (for further processing). It's all there in Know Your Body. This is THE supplement to the Green book for all those lay people out there, which is most of us.

Further supplementation: I Tunes U. Please check out this wonderful resource if you have access. Last night I listened to a professor at East Tennessee State lecture a class of what I believe were nursing students. From his lecture on the small intestine, I learned that there are at least three different sets of the most-rapidly dividing cells: nails, hair and those in the villi. In fact the epithelial cells of the villi are The Most Rapidly dividing cells. This is why people who are on chemo get sick. Makes sense! Chemo targets rapidly dividing cells, cancer cells, but also hair, nails and epithelials.

Sidetrack, sorry.

Know Your Body has one key component to facilitate learning: excellent drawings.

Who knows, I may regret my decision to go "all-in" learning about celiac disease, and I still have a long way to go (next up, IgA, antibodies, white blood cells, proteins-amino acids - basically the gluten trigger).

Please consider this wonderful (but hard to find) resource to aid your learning about celiac disease, auto immune disease, and to facilitate your care including doctors' appointments.

Plumbago

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This is an excellent topic to raise--many of us continue to seek answers, especially the medical community is still pretty much in the dark about celiac and gluten sensitivity.

Your post answered a burning question I've had for about four years. I had chemo for breast cancer in 2007, and prior to starting my treatments, I'd had to receive iron infusions on a regular basis for about two years because of my inability to absorb iron. The last time I had an iron infusion was during my first chemo treatment (since I was being infused with chemicals, they figured that they'd kill two birds with one stone). After four months of chemo, my ferritin tests indicated that my level was normal...and I've never needed infusions since that time. I figured that the chemo probably played a part, but I didn't know how it had worked its magic to heal my gut. From your post, it appears that, along with my hair and nails, the villi also regrew after I finished my chemo treatments. Dr. Green, whom I'd contacted prior to starting the treatments, had told me that many celiacs feel better after having chemo but that I had to be extremely diligent about eating a gluten-free diet while I was undergoing treatment. Now I know why!

As for good resources for learning about the effects of gluten and how to improve nutritional absorption, I can highly recommend, "Primal Body, Primal Mind." I know that the title sounds as though the book is all about touting a particular diet, but it's more than that. The author explains in depth exactly what gluten (and dairy, etc.) can do to a body--right down to the molecular level. She also explains how nutrients work together synergistically in our cells and how to improve absorption and utilization of nutrients. I learned more about nutrition and its effects on the body from this book than any other that I've read (and reading books on nutrition has been pretty much my hobby for the past 40 years).

Thanks for starting this informative thread!

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I think "knowledge is power" (teacher that I am), so I am with you!! Aside from consulting hubby's anatomy books, I have tried to read every scholarly journal article I can find. I figure the more I understand about Celiac, the more power I feel I have over it. I was bookmarking all I could find while researching for 2 years, but I discovered some generous person has compiled an incredible collection of Pub Med articles called "The Gluten File." I send this link to everyone I know.

Check this out!

http://sites.google.com/site/jccglutenfree/

I'd like to add two more books to your "library" :)

I HIGHLY recommend:

Recognizing Celiac Disease by Cleo Libonanti, RN

I often send newbies to the list of over 300 symptoms associated with Celiac on her site,

http://glutenfreeworks.com/gluten-disorders/celiac-disease/symptom-guide/

but reading the book made things so much clearer for me.

It explains how the GI tract works IN GREAT DETAIL. (For example, I wondered why I "burned" from my mouth right down my GI tract to you know where--and now I know why. No doctor could explain a burning mouth to me for 2 years before DX --they told me it was menopause and to "live with it" :blink: --so not true! Or why I had dozens of other inexplicable symptoms develop.)

It provides a primer on celiac disease as well as specific dietary guidelines.

But the most amazing part is the list of all the associated conditions, diseases and symptoms of celiac disease. There are charts explaining how vitamins, minerals, and amino acids are depleted in malabsorption. It also cites sources and explains if the condition resolves on a gluten-free diet or if it requires supplementation (such a vitamin D or B-12)or medical assistance and medication (such as thyroid disease).

It is a wealth of information that helped me make sense of what had gone so awry in my body.

Another good book for the newly diagnosed is:

Celiac Disease: The First Year by Jules Dowler Shepard.

Well- written and full of practical advice, including recipes, all from a celiac's perspective.

(I promise I do not know either of these women personally and am not just promoting book sales :lol: .)

This is an excellent idea for a thread. Thanks a bunch! :)

Cheers, IH

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I read a few books but the best knowledge I got was here in these forums. I read so many past threads in many different sub forums. I used the search function on this site and read thread after thread. Then of course posting your questions and getting answers helps a lot, but sometimes an issue has been discussed in depth at a different time and you can find a wealth of information.

The only thing I would caution against based on my own personal experience is the fear that can come with all that knowledge. Reading all the stories about people having other diseases and issues put a lot of fear in my head. Even after I was feeling well, I was convinced there must be something else lurking in there and I couldn't enjoy wellness. I had adopted a mindset of sickness and being well didn't cure that mindset.

So when you're reading all this stuff, try not to personalize it. If you identify with something then use it to help you, but our thoughts and our mindset is so important in healing in addition to diet, etc.

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The only thing I would caution against based on my own personal experience is the fear that can come with all that knowledge. Reading all the stories about people having other diseases and issues put a lot of fear in my head. Even after I was feeling well, I was convinced there must be something else lurking in there and I couldn't enjoy wellness. I had adopted a mindset of sickness and being well didn't cure that mindset. So when you're reading all this stuff, try not to personalize it. If you identify with something then use it to help you, but our thoughts and our mindset is so important in healing in addition to diet, etc.

This is so true!! And this is exactly why it is good to consult valid, reliable sources about the disease process so you understand it fully and to focus on healing your own body. While advice from those who have "been there/done that" is incredibly helpful, you have to use common sense as well. I worried about "maybe it's this, maybe it's that" at first-- because I was not healing fast enough.

Addressing vitamin/mineral deficiencies was key for me --but I only knew what to have tested by reading about the most common deficiencies that occur in celiac and then, telling my doctor to check the levels. I was so exhausted and it turned out to be a folate def. for example--and if I had not read about that, I would still be floundering (because he did not think of it!).

The best advice I try to relay to others who may still feel lousy for months after going gluten-free is...you're still healing; it does NOT necessarily mean you now have thyroid disease or some other complication. Sure you should have follow-up testing with your doctor, but try to relax. I always try to soothe the newbie's feathers because our minds can go to "what else is wrong with me?" so easily. Usually, "It just IS what it IS until it isn't. " :)

Healing takes time and you have to relax and be patient. It's not easy for those of us with major complications and pain, but unfortunately, there is no "fast forward" button. :rolleyes:

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I was having lingering fatigue for the longest time. I found out my iron was low normal. Low normal isn't good enough in my opinion considering the range is huge. I started taking iron and what a difference it made. But the doc just said it was normal. I had to look at my own labs and say wait a minute, this isn't good.

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I was having lingering fatigue for the longest time. I found out my iron was low normal. Low normal isn't good enough in my opinion considering the range is huge. I started taking iron and what a difference it made. But the doc just said it was normal. I had to look at my own labs and say wait a minute, this isn't good.

Good for you! Another good piece of advice for others is: be your own best advocate. I saved my own life. No exaggeration ;)

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I read a few books but the best knowledge I got was here in these forums. I read so many past threads in many different sub forums. I used the search function on this site and read thread after thread. Then of course posting your questions and getting answers helps a lot, but sometimes an issue has been discussed in depth at a different time and you can find a wealth of information.

The only thing I would caution against based on my own personal experience is the fear that can come with all that knowledge. Reading all the stories about people having other diseases and issues put a lot of fear in my head. Even after I was feeling well, I was convinced there must be something else lurking in there and I couldn't enjoy wellness. I had adopted a mindset of sickness and being well didn't cure that mindset.

So when you're reading all this stuff, try not to personalize it. If you identify with something then use it to help you, but our thoughts and our mindset is so important in healing in addition to diet, etc.

Thanks for this. So true about fear being a contagion on the Internet at times.

But it's not really what I was referring to in my original post. What I was saying or trying to say had to do with studying as opposed to quickly looking things up on the Internet, and darting from site to site. Book-learning vs Web-learning to put it simplistically.

I want to learn this thing from the inside out.

When I delve into it in this way, I actually have less fear (as someone earlier pointed out).

Plumbago

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I want to learn this thing from the inside out.

When I delve into it in this way, I actually have less fear (as someone earlier pointed out).

Plumbago

Yes! That's what I was saying!! I have no fear now ---because I know my "enemy" :)

NOT knowing WHY I was so ill and incapacitated and slowly dying for nearly 4 years was frightening. I KNEW there had to be an explanation for it all.

I find that most people are intimidated by this DX because they do not really understand it. No reason to be scared.

I'll say it again...Knowledge is power. ;)

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All the replies have been very good so far. I wish there were more!

One thing that I would like to have are more recommendations for books. The Green book was very good, once I supplemented my knowledge with the Atlas of Anatomy. Without the latter book, the Green book was only moderately useful to me, if that.

We've gotten some good recommendations so far. Are there any more? In particular, I'm looking for a description of the "attack." The gluten attack. Antibodies, white blood cels, messengers telling attackers to continue or to cease.

And gluten.

What is this thing? Does it have any nutritive value (for non-Celiacs of course)? Where does it go? Does it just lodge in the wall of the small intestine? Or does it go somewhere else?

Proteins, amino acids. A good description.

So please recommend away!

Also, would it not be great to have a live online discussion with some celiac disease experts from time to time? Advertised with a big scrolling banner, so that we can all mark our calendars ahead of time?!

How can we make this happen?

I hope everyone enjoyed their Thanksgiving.

Plumbago

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All the replies have been very good so far. I wish there were more!

One thing that I would like to have are more recommendations for books. The Green book was very good, once I supplemented my knowledge with the Atlas of Anatomy. Without the latter book, the Green book was only moderately useful to me, if that.

We've gotten some good recommendations so far. Are there any more? In particular, I'm looking for a description of the "attack." The gluten attack. Antibodies, white blood cels, messengers telling attackers to continue or to cease.

And gluten.

What is this thing? Does it have any nutritive value (for non-Celiacs of course)? Where does it go? Does it just lodge in the wall of the small intestine? Or does it go somewhere else?

Proteins, amino acids. A good description.

So please recommend away!

Also, would it not be great to have a live online discussion with some celiac disease experts from time to time? Advertised with a big scrolling banner, so that we can all mark our calendars ahead of time?!

How can we make this happen?

I hope everyone enjoyed their Thanksgiving.

Plumbago

The book I recommended (above) Recognizing Celiac Disease --has quite a bit about gluten, what it is and how it "attacks", protein toxicity, antibodies, and what ensues in the GI Tract and the entire body in celiac disease. Not sure how much else there is to know after all that, but if I find anything else, I'll let you know. :)

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The book I recommended (above) Recognizing Celiac Disease --has quite a bit about gluten, what it is and how it "attacks", protein toxicity, antibodies, and what ensues in the GI Tract and the entire body in celiac disease. Not sure how much else there is to know after all that, but if I find anything else, I'll let you know. :)

Sorry, I meant to comment specifically on that recommendation. First I was going to check it out from our library system (you know, that of the capital of the United States?), but alas, not available. Sadly this is not unusual.

So, I called a local bookstore. No, not available to order. I prefer to buy things at real walk-in stores, but I'm not sure this is going to be possible.

Thanks for the recommendation, wish me luck tracking it down.

Plumbago

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Sorry, I meant to comment specifically on that recommendation. First I was going to check it out from our library system (you know, that of the capital of the United States?), but alas, not available. Sadly this is not unusual.

So, I called a local bookstore. No, not available to order. I prefer to buy things at real walk-in stores, but I'm not sure this is going to be possible.

Thanks for the recommendation, wish me luck tracking it down.

Plumbago

Go to the site link I posted earlier..it's there. About $36 I think.??

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Go to the site link I posted earlier..it's there. About $36 I think.??

I ordered it from Abe Books. Thank you so much for the recommendation.

Although I haven't read it yet in much detail, it is a workbook and seems to be just in line with what I am looking for.

We'll see if I can at last understand the gluten attack!

Plumbago

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I ordered it from Abe Books. Thank you so much for the recommendation.

Although I haven't read it yet in much detail, it is a workbook and seems to be just in line with what I am looking for.

We'll see if I can at last understand the gluten attack!

Plumbago

It's not really a workbook exactly, but the layout seems like one. :)

I found it to be an excellent resource and it explained why I burned so much and how I developed all my deficiencies, etc. It all made sense.

The GI tract is explained in such detail.

Hope you find it helpful.

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Celiac Disease: The First Year by Jules Dowler Shepard.

Well- written and full of practical advice, including recipes, all from a celiac's perspective.

I really liked this book too. It's a good book for coping with a diagnosis and the next steps to take.

I just finished reading "Healthier without Wheat" by Stephen Wagnen. He covers both Celiac and NCGI in the book. He describes a lot of the medical issues but in laymen's terms. I liked that he acknowledged a lot of the NCGI issues as well as the actual Celiac stuff.

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I really liked this book too. It's a good book for coping with a diagnosis and the next steps to take.

I just finished reading "Healthier without Wheat" by Stephen Wagnen. He covers both Celiac and NCGI in the book. He describes a lot of the medical issues but in laymen's terms. I liked that he acknowledged a lot of the NCGI issues as well as the actual Celiac stuff.

I have that one by Wagnen as well. :)

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